Charcot-Marie-Tooth: Cold Weather, Socks, and Feet

“Athletic Socks”
Photo by the happiest face =) from Pexels

Oh, my word! One of the worst physical feelings when living with Charcot-Marie-Tooth (CMT) is cold feet in the winter months. If you haven’t experienced it, most likely you will. It seems to be almost impossible to avoid. This followed by the challenges of getting my feet warm again.

When I was younger, probably in my twenties, there weren’t many resources to help CMT patients. You learned what you did by thinking about ways to help yourself or by asking others their opinions. Sometimes a doctor or physical therapist will have ideas. I had family members whom I could ask questions.

First, you have to realize that cold feet are not the typical cold feet that other people have. Since the nerve endings in our extremities, hence legs and feet, are not working as they should, we experience neuropathy which allows our feet to get cold.

For me, learning to keep my feet warm, and stay warm, was quite a bit of trial and error. My favorite trick was double socks. In the mornings when my feet were still warm, I would put on two pairs of my favorite comfortable tube socks. Simple enough, right?

Wrong.

When you put on the first pair of socks, be sure to align the far point of the sock with your big toe. With a new pair of socks, especially tube or athletic, you may not notice where the big toe should go. With these, you use your best judgment and adjust accordingly. When you use this pair next time, you’ll know. Next, pull the socks up toward your knee. Do the same with the other foot. Before you put on the second pair of socks, stand up. Take a minute to walk around making sure that your feet are absolutely comfortable in the socks. Also, make sure that there are no wrinkles. Once you are comfortable in the first pair of socks, put on the second pair following the same procedure.

Why do all of that for putting on your socks? You will thank me for this. If you do not do that, it’s very possible that the socks will either not be aligned properly or have wrinkles or both. At first, I didn’t do this routine, I just put my socks on and went out the door.

Within a short period of time, I was surprised to find myself having horrible pain in my feet. However, since I was out, there wasn’t much I could about it until I got home. When I got home, I found the socks to be wrinkled and turned.

The next day I paid serious attention to the manner in which I put on my socks. The pain wasn’t happening again if I could help it.

The second pair of socks can be another pair of tube socks, dress socks, or outdoor socks which keep feet warmer in the cold weather. When the sock industry began making socks for every season, reason, or whatever that could possibly be, I found pairs that kept my feet warm without a second pair. I’ll share those in another post.

Charcot-Marie-Tooth: My Journey to using Arizona Braces

“Working With the Doctor”
Photo by Ryan Snaadt on Unsplash

This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.

The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.

My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.

My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.

The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.

I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.

The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.

Quit staring at my feet! My face is much more interesting!

“Quit Looking At My Feet”
Photo by Tim Marshall on Unsplash

If I had to pick one pet-peeve I have with having Charcot-Marie-Tooth (CMT) it is the annoyance I get when I see people staring at my feet. Then, they look up at my face back to my feet and back to my face. I’m like “really?” Yes, my feet are turned out! Yes, it is difficult or challenging to walk. Yes, you probably have never seen feet like mine. Yes, it looks like I am walking on the sides of my feet. Trust me, I am not. Almost, but not yet. YES, IT IS RUDE to stare. Not only is it rude, it is painful to see someone staring at my feet. Stare at my face instead, it is better looking. If you keep staring at my feet, you will miss how handsome I really am!

So I understand when children do it since some are still learning manners and others don’t know any better because their parents haven’t taught them. The teenagers through senior adults need to re-learn their manners. When you see something unique on another person such as deformed feet, missing an arm or leg, or maybe wounds on someone’s face, think about how you would feel if you were them and people were staring. It is difficult enough to go through life having an obviously less-than-perfect body without the annoyance of stares.

Years ago, you would never catch me barefoot in public. It was heartbreakingly painful to see the stares. Before that, you wouldn’t catch me in public in shorts. So much easier to hide my feet in long pants and shoes.

However, I got to thinking. I love being outside in shorts and barefoot. I love the freedom it gives. Why should I let those who do not have enough manners not to stare stop me from enjoying myself in shorts or going barefoot? So, I practiced not paying attention to those people. Always looking ahead. And, when I see someone doing it, I look the other way.

In case you are wondering, yes, I would love to tell them to “quit staring- it’s rude!” But, I digress. It would be energy not well spent.